studies. Research both identified lead-based paint as a cause of lead poisoning among children and showed that the abatement techniques previously used actually increased lead poisoning because they caused lead contamination of house dust, which children ingest. Research on housing health hazards has led to changes in public policy, such as improved screening for risk factors and regulatory changes to reduce risks.
Housing health hazards research focuses on a risk factor that is not a physical susceptibility to disease, but rather results from environmental conditions that generally exist in poor-quality housing. Many of those conditions could be improved by better quality housing, but there is a lack of decent affordable housing for children in low-income families. Research is often conducted with children in low-income families because they experience the greatest risk and because they have the most to gain from such research.
The 2001 case of Grimes v. Kennedy Krieger Institute highlighted uncertainties and conflicts involving several issues integral to research on housing health hazards. Although the case was eventually settled out of court, the ruling of the Maryland Court of Appeals raised important issues involving the adequacy of informed consent, parents’ perceptions of risk, duties of researchers to child subjects and their parents, the role of institutional review boards (IRBs), and the authority of parents to provide permission for their children to participate in research that is not intended to provide direct benefit for their children.
The issues posed by that case led the Department of Housing and Urban Development, the Centers for Disease Control and Prevention, and the Environmental Protection Agency to request a study from the National Academies on ethical issues related to housing health hazards research. The Committee on Ethical Issues in Housing Related Health Hazard Research Involving Children, Youth, and Families was formed in response to that request, under the Board on Children, Youth, and Families of the National Academies’ National Research Council and Institute of Medicine. Broadly, our charge was to review and synthesize existing approaches to conducting housing health hazards research involving children and the challenges and ethical issues that arise in conducting that research and to identify approaches to ensuring the ethical conduct of that research.
The current regulatory framework that governs research involving human participants (referred to in the regulations as “subjects”) that is conducted or funded by certain agencies of the federal government is based on the fundamental ethical principles of respect for person, beneficence, and